National Brain Tumor Society – Public Policy and Advocacy Update
Vol. 2 No. 12
December 8, 2012
- NIH Funding Still in Danger as Fiscal Cliff Talks Continue
- Brain Tumor Community Must Have Access to Essential Health Care Services
- 2012 – A Year of Growth
- December Advocate of the Month – YOU
NIH Funding Still in Danger as Fiscal Cliff Talks Continue
As the holiday break approached, Congress and the White House were still short of a deal to avert the upcoming fiscal cliff, or sequestration. The brain tumor community, and our fellow medical research advocates, have been watching the news closely because the budget for the National Institutes of Health (NIH), the largest funder of brain tumor research in the country, is on the chopping block if sequestration goes through. For more on how NIH and brain tumor research could be affected, see our policy update.
But, it’s not over yet. We know the negotiations continue and we must speak up on behalf of the thousands of people living with a brain tumor, and anyone who will be diagnosed in the future. We must let Congress know that we are relying on the innovative discoveries funded through NIH to bring us closer to newer, better therapies and a cure. Will you take one minute today to ask your Members of Congress to protect NIH?
Brain Tumor Community Must Have Access to Essential Health Care Services
This month, the National Brain Tumor Society weighed in on what the Affordable Care Act, the health reform law, will define as Essential Health Benefits (EHB). As required by the law, every state is currently working to determine a minimum set of services to be covered by health insurance plans sold in their state-based insurance marketplaces, or Exchanges, and they are doing so with guidance and requirements from the US Department of Health and Human Services (HHS). It is critical that brain tumor patients are able to access and afford necessary services and the ACA provides the opportunity to ensure that they are covered by insurance products sold in each state.
Last week, insurance commissioners in all 50 states received a letter describing the necessary services that brain tumor patients may need in the course of and following their treatment. The letter reflects the services outlined in a chart of necessary health care services developed with input from our Medical Advisory Board. We asked that they consider these needs as they develop the EHB package for their states. In addition, HHS recently put out a proposed rule that will provide guidance to those state officials developing their EHB packages and they solicited public input before developing the final rule. We responded to HHS with specific comments and again provided the chart.
We'll continue to monitor this Essential Health Benefits process, as well as other implementation efforts going forward, for opportunities to ensure that the voices and needs of the brain tumor community are heard.
2012 – A Year of Growth
As we wrap up the year, we want to take this opportunity to thank you for all you have done to strengthen research, advance therapies, and improve health care for the brain tumor community.
This was a year of growth for the brain tumor community’s voice in the policymaking process and we raised our voice to new heights. Thousands of brain tumor advocates from every state took action to let their elected officials know our priorities and what it will take from them to fight brain tumors. We mobilized in record numbers both in Washington D.C. at Head to the Hill and back home through in-district meetings with Congress. Here are some highlights:
- Advocates from 23 states traveled to DC for Head to the Hill, conducting 94 Congressional meetings in one day
- The base of advocates across the country grew to more than 10,000 in 50 states – more than a 900% increase in one year
- Advocates in key states stepped up to lead their communities as the first-ever class of State Lead Advocates began their work
We also took our cause to the federal agencies including the National Cancer Institute, the single largest funder of brain tumor research in the country, and the Food and Drug Administration, which reviews and approves new therapies. We also advocated with the Department of Health and Human Services and state insurance commissioners to make sure that brain tumor patients have adequate health insurance benefits. As you know - our work in public policy is aimed at creating the most favorable environment possible for patients and families, researchers and industry to ultimately find a cure for brain tumors. Specific 2012 policy accomplishments include:
- Successful advocacy with Congress and the FDA for potentially faster therapy approval processes. (Enactment of FDA Safety and Innovation Act).
- Increased Congressional support for affordable oral chemotherapy like Temodar. (Increase in co-sponsors of Cancer Drug Coverage Parity Act).
- Maintained funding for National Institutes of Health and National Cancer Institute. (Brain tumor research grant funding actually increased from 2011 to 2012).
- Educated our community about the impact of the Supreme Court’s decision regarding the Affordable Care Act.
December Advocate of the Month – You!
Our advocates made great strides this year. The accomplishments we’ve just outlined could not have happened without the passion and dedication of the amazing brain tumor advocates all around the country. Thank you for everything you’ve done!
So much has happened and, while we still have much to do, we know that, together, we’ll ensure that the voice of the brain tumor community is heard. We look forward to working with you in 2013. Happy New Year!